Stomach problems doctors tests coming up blank what to do next

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My 16 year old daughter has been suffering since April 2015 with constant nausea (but not being sick), acid reflux, dizziness, fatigue and slow weight loss (appetite was okay) it came on all of a sudden.

She was admitted with suspected appendicitis in the September 2015 as she was having bad stomach pains/cramps sickness with a high temperature but it was diagnosed as mesenteric adenitis on a ultrasound scan. She has had a couple more episodes a few months later but never went to hospital.

Roughly from April 2016 she has had irregular bowel habits i.e. bouts of diarrhea, loose stools to not going regularly (but not constipated) all with lots of mucus, her periods have also stopped.

From the summer in 2016 along with the constant nausea (etc..) she has had constant stomach discomfort/cramps the irregular bowel habits (bouts of diarrhea, loose stools, mucus and not going regular) now contain blood, the stomach cramps get really bad before a bowel movement. She has slowly lost weight at the beginning even despite the fact that she was eating fine but since the stomach pains have been constant (summer 2016) her appetite has gone so the weight has significantly dropped. She also has discomfort when she eats.

She has had two endoscopy (January 2015 and January 2016) in which neither showed anything abnormal. A recent colonoscopy (February 2017) showed Melanosis Coli she has never taken any laxatives apart from the prep. She has also had a mri of her small bowel which came back clear (February 2017)She has done numerous stool tests, one of which showed raised levels of Calprotein at 113 (in December 2016). She has also been tested for Hpylori and treated for it even though it came back negative (in September 2015).

The blood test in July 2015 results showed she was very low in folic acid. The blood test in July 2016 showed she very low in vitamin D, both of which have been treated and the recent blood test came back with everything within normal range.She is currently taking a multi vitamin, 2x20mg omeprazole a day and a probiotic. She has also tried mebeverine, domperidone,pizotifen,prochlorperazine, propranolol, alimemazine none of them have helped.

Family history; my father died from bowel cancer and my brother had coeliac and ulcerative colitis (passed away).

Her total weight loss was 21kg, her bmi went down to 13 but it is slowly raising due to nourishment drinks (Fortisip Compact). She has been assessed for any eating disorders and any psychological cause that may be responsible, all came back negative which is what we expected/predicted.

This has been affecting her for coming up to 2 years now. She has not attended school since April/May 2015 and has had to withdraw from GCSEs due to of all these health issues.

She was 8lb born, normal delivery she was bottle fed and fed great no problems and was completely healthy. She had never suffered from any health issues until this began.

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  • Posted

    Hi it's hard to say as I'm not a doctor but I do know the range for colproctecin is between 0-50. I'm not sure wat they consider high and even though hers was over that it still could be considered as normal. In my opinion i think she should have another stool sample, preferably wen she has symptoms. It could be IBS? Blood could be a few things like piles.

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    • Posted

      Yes I agree I think they should be asking for another stool sample to check the levels but they haven't done but going to ask her gp next week see if he will do it. The blood in her stools she doesn't have piles or tears as she was checked for that. She has the symptoms constantly but they do get worse every so often

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  • Posted

    Sorry to hear your daughter has been going through such a tough time. I'm sure it's been v worrying for you too.

    To add my understanding of calprotectin levels - most assessments work on anything up to 50 being normal or IBS. Anything north of this is generally (the tipping point does vary a little but not much - search online) considered as IBD (Crohns / UC) or an infection, and I'm sure they would have eliminated the latter already.

    Accuracy of testing isn't 100% and often multiple samples are taken at the same time or across a day or two. My calprotectin has slowly come down from 500 (GE Doc described as significantly raised but I've seen on here one person with a level of 6000!) and following six months of taking a 5ASA drug is now down to 100 which the GE considers "managed Crohns".

    Based on the calprotectin level alone I personally would ask at your Doc what is a normal healthy level to spark a conversation.

    V helpful breakdown of the history - certainly helps. I'm not familiar with melanosis. You don't mention what the current diagnosis is, are they still trying to figure that much out? Unfortunately this is often the way with gastrointestinal problems.

    Matt

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    • Posted

      P.s when I say north of 50 calprotecrin - I mean the tipping point score of normal to abnormal can vary a little but I've categorically asked my GE what's greater than 50 mean and he's said definitely infection or IBD, and definitely not IBS.

      Didn't want to mislead as its an important point.

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    • Posted

      Hi, melanosis Coli is just a darkening of the walls due to over use of laxatives this was found on the colonoscopy she has never used them apart from the prep. One dr has said its ibs but I don't believe it is, she has seen a few gastro consultants as she was admitted last month for a week due to her weight affecting her heart they was thinking ibd but as camera came back with nothing she was referred to be assessed for psychological causes which came back she hasn't (if she passing blood don't see how could be) so it was left to her normal consultant which is situated at another hospital who we saw yesterday who checked her for piles or tears which she doesn't have who suggested the ibs he has never mentioned the calprotein levels which was done back in December last year and I completely forgot to bring them up when he suggested ibs his trying her on some mebeverine to see if they help the spasms and some other tablets to see if they will increase her appetite got to go back in 6 weeks. I'm going to ask my gp next week to see if he will redo the stool test as I would have thought they should have checked it again her last blood test for inflammation came back normal but does yours show up in blood work ?

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    • Posted

      To give my experience with various tests - for me, only the calprotectin has shown anything with all bloods being fine.

      Colonoscopy doesn't always manage to get to the terminal ileum in the small bowel. This is a common area for Crohns. Worth asking about this too as Crohns might only show in one small patch. The ileum is highly important for the absorption of nutrients and can lead to deficiencies or weight loss (although of course, it's not the only health problem that can have this impact).

      A capsule endoscopy could be used to check 100% of the digestive system. Endoscopy / Colonoscopy is the primary check but MRI and capsule endoscopy are used to fill the gaps so to speak. Crohns effects everyone differently, it could just be a very small area that's not been seen by the Doc. I hope you make progress with the GP. Calprotectin is a first line marker for GPs so they shouldn't be too resistive.

      It took around 4 years for me to get a diagnosis as I'm on the mild end of things, but my symptoms were only heavier for a year or two with the rest possibly being IBS or the starting of Crohns - Not as severe as your daughters symptoms so hopefully diagnosis is there for the taking. Keep us posted. Always good to hear of eventual success stories. Matt

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    • Posted

      Just bc a blood test doesn't show inflammation doesn't mean you don't have any inflammation. I took a blood test and got a colonoscopy and my blood test came back normal with no inflammation. But my colonoscopy was found to have proctitis (inflammation in the rectum). More likely I wasn't inflamed enough for it to show on a blood test. Also I was feeling pretty good that day so maybe that had something to do with it.

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  • Posted

    My calproctecin levels waa greater than 6000 and think its either crohns or infection. My symptom's suddenly disappeared. I think wen its about 100 its considered normal but do it again. The levels don't mean too much wen its higher its based on someones symptoms. But I would like someone to tell me wat these level's mean. It could be a food intolerance. I keep s food diary to see wat aggregates my stomach. If everything is ruled out you could safely say its ibs

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  • Posted

    More than happy to give details in case it is of some help.

    I had the initial usual tests which included an endoscopy and colonoscopy. All tests and examination were Ok, might have had an intestinal ulcer but nothing they were concerned with. Diagnosis was IBS but looking back - I was a mess. They recommended I managed via lifestyle e.g. try excluding gluten etc. I had some progress without any support but not enough.

    A year or two later I got a second opinion with another endoscopy and colonoscopy and usual bloods and calprotectin - just a little bit of inflammation visually apparent. IBS diagnosis - referred to dietitian. Low FODMAP diet really helped but it's targeted at IBS (I have Crohns and IBS). Still had plenty of symptoms and after another year or so was referred again.

    Blood and stool tests all clear. Thought I'd seen a parasitic worm in stools - explored that but amounted to nothing. Then asked after test for Crohns as friend with Crohns said how it sounded very much like it. At this point I'd been helping myself as much as possible with homemade keffir and other pre/probiotics - so I stopped to avoid it masking anything. Whether it was a Co-incidence or not, faecal calprotectin showed as elevated, and same again on RE-test. Then had another colonoscopy that showed a small number of ulcers but not conclusive. Had MRI - showed some inflammation, told I had Crohns which was then retracted. Then had capsule endoscopy which showed a little more ulceration. GE said he didn't think it was Crohns but 50% of GE's would say it was Crohns - v frustrating. Persuaded him to put me on oral budisonide steroids which he said would confirm Crohns if it improved my symptoms. It did, and Crohns it was! But before confirming, my GE reviewed all imaging with a panel of consultants and said looking at number of ulcers I just fit into the Crohns classification.

    It all comes down to the quality of the information they're working too e.g. RE-tests as needed, clear imaging to show end to end intestines etc. Also, 100% keep on their case and fight your case.

    It certainly wasn't easy.

    Matt

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  • Posted

    Finally got the doctor to do another calprotien test it came back 701 and now he blaming it on her not eating even though she taking in 1200 calories of the fortisip drinks a day minimum and she's had to do another one which waiting on results for. Doctors don't seem bothered because nothing obvious shows up none of her symptoms have improved at all and sometimes days are a lot worse than others

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